Thursday, April 17, 2014

Natural cures

On Dr. Oz today: If there were natural cures for things like cancer, patients would be raving about them; the govt might be able to muzzle doctors, but not patients.

http://www.doctoroz.com/episode/government-out-undermine-your-health

 
From the IACFS/ME "Primer for Clinical Practitioners",
"Patients may not know that 'natural' does not necessarily mean 'better' or 'safe'. (p.26)
 
 

Sunday, April 13, 2014

Fibromyalgia Research Study: Invitation 2

Fibromyalgia Research Study: Invitation 2


You are invited to take part in a research study: Acceptance-Based Factors in Chronic Pain: A Comparison Between Fibromyalgia and Low Back Pain Patients in an Internet Support Group Sample (COMIRB No: 13-3263). This study is being led by Jessica Payne-Murphy, M.A. at the University of Colorado Denver.

 

The study involves answering a series of online questionnaires designed to increase understanding of chronic pain. We are inviting participants (age 18 and older) who have been and are currently managing low back pain or fibromyalgia for at least 3 months to complete an online survey. It is anticipated that this survey will take approximately 30-45 minutes of your time to complete.

 

If you choose to participate in the study, you will have the opportunity to enter a drawing for one of up to ten $50 Amazon.com or Amazon.eu gift cards.


In addition, we request that you forward/share the survey link to other individuals with chronic low back pain or fibromyalgia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about chronic pain and online support groups.

 

Please click on the following link if you are interested in learning more about the research study: https://redcap.ucdenver.edu/surveys/?s=VUhDGxvcmQ

Friday, April 11, 2014

CFIDS.org survey

Submissions from the CFIDS Association:


There is a lot of activity on a federal level related to ME/CFS -including the Pathway to Prevention (P2P) initiative through the National Institutes of Health. In this post we break down the P2P program and where ME/CFS is in the approval process so far.
http://solvecfs.org/pathways-to-prevention-for-mecfs/


____________



The third meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS <http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-MAY-05.aspx?utm_medium=etmail&utm_source=Institute%20of%20Medicine&utm_campaign=03.31.14+MECFS&utm_content=&utm_term=> will be held May 5-6, 2014 in Washington, D.C. On the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. The objectives for the committee during this open session are to learn more about the cognitive, sleep, and diagnostic issues related to ME/CFS; and to seek input from patients and caregivers regarding their interaction with health care professionals. They are asking:
1.       In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
2.       What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

In order to gather as much response from patients as possible, the CFIDS Association has created a simple online survey to address the IOM Committee's specific questions. We will compile your answers into a report and submit them in full prior to the deadline. Access the online questionnaire HERE https://www.surveymonkey.com/s/IOMQuestions  - DEADLINE, April 22nd at noon, Central
http://solvecfs.org/iom-announces-another-public-meeting-with-the-mecfs-committee/

Leigh A. Reynolds  |  Engagement
LAReynolds@CFIDS.org<mailto:LAReynolds@CFIDS.org>  |  816.863.5577

The CFIDS Association of America | Join us at our new online home! www.SolveCFS.org<http://www.SolveCFS.org>
Working to make ME/CFS widely understood, diagnosable, curable & preventable

Wednesday, April 9, 2014

Yay!

Someone on Dr. Oz, "5 years ago, we didn't think Chronic Fatigue Syndrome was a real disease, and now we know it is."
 
:)
 
They're talking about adrenal fatigue (which I haven't decided yet if that's Real CFS or just a lookalike).
 
 

Savella is just another gasoline additive. It won't work in an empty tank.

Savella is just another gasoline additive. It won't work in an empty tank. Using a serotonin re-uptake inhibitor when their isn't any serotonin to re-uptake just doesn't work. Treat the causes not the symptoms. Please share https://www.facebook.com/notes/rodger-murphree/savella-is-another-gasoline-additive/111925752214581

 

Long note, worth reading especially if you have sleep problems.

Tuesday, April 8, 2014

C-Reactive Protein and Fatigue

http://www.ncbi.nlm.nih.gov/pubmed/23151405

Psychol Med. 2013 Aug;43(8):1773-83. doi: 10.1017/S0033291712002437.
Epub 2012 Nov 14.
Association of C-reactive protein and interleukin-6 with new-onset
fatigue in the Whitehall II prospective cohort study.
Cho HJ1, Kivimäki M, Bower JE, Irwin MR.

Author information

1Cousins Center for Psychoneuroimmmunology, UCLA Semel Institute for
Neuroscience and Human Behavior, Los Angeles, CA, USA.
hjcho@mednet.ucla.edu

Abstract

BACKGROUND: Although basic research on neuroimmune interactions
suggests that inflammatory processes may play a role in the
development of fatigue, population-based evidence on this association
is limited. This study examined whether plasma C-reactive protein
(CRP) and interleukin-6 (IL-6), biomarkers of systemic inflammation,
predict fatigue onset.

METHOD: The Whitehall II study is a large-scale cohort study conducted
in 20 civil service departments in London. Plasma CRP and IL-6 were
measured in 4847 non-fatigued participants at phase 3 (1991-1993, aged
39-63 years). Fatigue was assessed using the Vitality subscale of the
36-item Short Form Health Survey (SF-36) at phase 3 and phase 4
(1995-1996).

RESULTS: During a mean follow-up of 3.1 years, 957 new fatigue cases
(19.7%) were identified using the pre-established cut-off score of ≤
50 on the Vitality subscale. CRP values were dichotomized as low (<1.0
mg/l ) or high (≥ 1.0 mg/l) using the Centers for Disease
Control/American Heart Association recommendations. Similarly, IL-6
values were also dichotomized as low (<1.5 pg/ml) or high (≥ 1.5
pg/ml). After full adjustment for sociodemographic and biobehavioral
covariates, the odds ratios for new-onset fatigue were 1.28 [95%
confidence interval (CI) 1.09-1.49, p = 0.003] for high CRP and 1.24
(95% CI 1.06-1.45, p = 0.008) for high IL-6. Similar results were
found when CRP and IL-6 were treated as continuous variables.

CONCLUSIONS: Plasma CRP and IL-6 were prospectively associated with
new-onset fatigue, supporting the hypothesis that low-grade
inflammation has a role in the development of fatigue.

PMID: 23151405 [PubMed - indexed for MEDLINE] PMCID: PMC3819455
[Available on 2014/8/1]

Monday, April 7, 2014

Bodily Distress Syndrome : a biased, dangerous supposition

Stonebird

Bodily Distress Syndrome : a biased, dangerous supposition.

(This article is endorsed by the 25% Severe ME Group & The Grace Charity)

Greg & Linda Crowhurst
(with grateful thanks to Susanna Agardy)

April 2014

http://stonebird.co.uk/bds.pdf


Bodily Distress Syndrome (BDS) is an attempt by psychiatry to group
patients with the physical diseases of Fibromyalgia, CFS ( and by
implication ME), Hyperventilation, IBS, Non Cardiac chest pain, Pain
syndrome and patients labelled as having a somatoform disorder, under one
collective mental health label, exclusively upon symptoms.

Given that its underlying hypotheses is one of an abnormal stress response
WITHOUT corresponding abnormalities in specific peripheral organ systems,
BDS places an emphasis on bodily distress with apparent 'increased
sensitivity to symptoms or sensations' (Fink et al 2007).

According to an NHS pilot BDS scheme in Barnet, the illnesses above,
specifically including Myalgic encephalomyelitis ( ME), are treated
through a  "Cycle of Change", based on behaviour modification, leading to
recovery. Considering that the NHS itself states that there is no cure for
"CFS" ( in which it includes Myalgic encephalomyelitis), that is an
astounding claim for to make.

It is also extraordinary, considering that contemporary biomedical research recognises ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress (O&NS), O&NS-mediated damage to fatty acids, DNA and proteins, autoimmune reactions directed against neoantigens and brain disorders
(Maes et al 2014, WillBeatCFS 2013), requiring a skilled  biomedical
response. BDS, however, appears to ignore this.

BDS, in line with everything else the so-called "psychiatric lobby" puts
out, is skilfully wrapped in a self- fulfilling, circular argument, based
on a fallacy, that is immensely tricky and slippery to untangle. It sounds
plausible to some, acceptable to others and is accepted by those who do not
have the integrity or discernment to look more deeply, with biomedical
understanding.

For many years, the  psychiatric lobby, which exercises immense influence
over Government policy, has been aggressively promoting a conceptualisation
of Myalgic Encephalomyelitis as a mental illness, a conceptualisation that
also fits the needs of the medical insurance industry (cf. Pileki et al
2011) through :

1. a failure to distinguish between mental health disorders and physical
diseases
2. a deliberate focus on fatigue rather than system dysfunction
3. research bias
4. suppression and deliberate exclusion of biomedical evidence
5. ongoing attempts to "eradicate" physical diseases by asserting that they
are nothing more than an "aberrant illness belief"
6. denial that ignores significant symptoms and signs, especially
cardiovascular, neurological and immunological
7. influence and functioning in areas of medicine in which they have no
expertise such as immunology, vascular biology and muscle pathology (cf.
Hooper 2010)

The result is a system that tries to make people with ME into mentally ill
persons, with a psychiatric diagnosis. (cf.  Nørgaard 2014) It has resulted
in the  medical neglect and mismanagement of tens of thousands of  people
with serious physical illness and even deaths.

A Dangerous  Agenda

BDS plays to a dangerous psychiatric agenda. The questions designed to identify ME constantly use the term "bothersome". Use of this term reveals how little the severity of the illness experience BDS actually describes, is understood. Severe ME, for example, has been compared to terminal cancer and last stage AIDS, hardly 'bothersome'. 'Bothersome' aligns with the impression that something is irksome but not serious.

Expressions such as : "Unfortunately, some patients feel that they have
been misunderstood" or "if you feel something is wrong", are offensive and
misrepresentative, given how many patients, in reality, ARE  misunderstood
by their doctors, specifically because of the powerful influence of
psychiatry. It is not just a "feeling of being misunderstood"  or "a
feeling of something wrong," it  is a fact. There IS something very wrong.

The description of "unpleasant feelings" is an underplaying  of the
severity of pain and the ongoing assault and intensity of suffering and
system dysfunction that patients experience without any relief or even
basic treatment. The most severe need morphine, anti- epileptics and
steroids to cope with pain. Even so, the pain is not diminished. Hardly
"just unpleasant".

It should be noted that there is not a diagnosis listed in the major
psychiatric diagnostic manuals (such as ICD and DSM) that is associated
with any sort of physical test, so, unlike the rest of medicine, aetiology
appears to have an insignificant part to play in deciding upon the
diagnosis of BDS (cf. Timimi 2011) A recent study, for example, has found
that virtually all fibromyalgia patients would be classified as having a
mental disease under the DSM-5's new criteria for somatic symptom disorder
and a   substantial portion of rheumatoid arthritis patients would also met
the threshold and  be considered to have a mental illness under DSM-5.
(Wilken 2014)

As Susanna Agardy points outs:  Psychiatry is all too willing to attribute perverse motives to patients. The significance of physical symptoms is also misinterpreted: for example, if an ME patient is unable to walk, this is regarded as a behavioural choice. Psychiatry has required no evidence of itself for these preferred interpretations. There is no display of dispassionate, scientific assessment and no possibility of an alternative diagnosis or treatment is entertained in these cases. The patient is always judged to be in the wrong. Making these favoured interpretations help the practitioners perpetuate their own belief system but are devastating to the patients. (cf Agardy 2012)



The Diagnostic Process

A diagnosis of BDS  rests purely on the knowledge, integrity or personal
bias of the practitioner.

Fink et al have found four identifiers for BDS (2007) which are cast in the
role of manifestations of BDS:

1: General symptoms such as headache, dizziness, fatigue, memory impairment
and concentration difficulty
2: Symptoms from abdomen and intestines
3: Symptoms from muscles and joints
4: Symptoms from heart and lungs

To arrive at these identifiers a stratified sample of 978 patients was
examined applying diagnostic questions based on the SCAN (The Schedules for
Clinical Assessment in Neuropsychiatry) instrument, a psychiatric
assessment protocol, which is ultimately dependent upon the interviewer's
"clinical judgment".

The physical health chapter of the SCAN interview explores 76 physical
symptoms distributed among seven symptom groups. The interviewer rates each
symptom to be either absent, attributable to a medical
condition/dysfunction, or functional (somatic). The section relating to
fatigue for example, queries: "Unwarranted fatiguability after even minor
physical exertion. The emphasis is on feelings of bodily or physical
weakness and exhaustion after only minimal effort, accompanied by a feeling
of muscular aches and pains. Respondents experience the tiredness as
unpleasant and distressing."

The repeated use of the word 'feeling' illustrates the subtle jump from
actually experiencing a symptom to just apparently 'feeling' that you are
experiencing it. The wording may be misunderstood by patients being
questioned, who obviously feel the  impact of the symptom, but it is not
just an emotional feeling, as inferred by the question - it is a PHYSICAL
one.  Feelings in psychiatry presumably primarily refer to emotion whereas
the person experiencing the physical reality of exhaustion, for example,
means they can actually feel it physically. They actually do not have
enough energy.

Fink et al (2007) acknowledge possible explanatory factors such as'
hyperactivity of the
autonomic nervous system', ' malfunction of the reticular system located
within the brain
stem and the medulla' ' The hypothalamic-pituitary-adrenocorticalaxis may
be involved. as well.' and attribute  physical symptoms to "Autonomic
arousal & HPA axis hyperactivity 'alertness'"  According to BDS this leads
to a stress state without involvement of the organs.

However the activity of the hypothalamus-pituitary-adrenal (HPA) axis - a
major player in the neuroendocrine system that controls reactions to stress
and regulates many body processes - is known to be blunted in ME (Crowhurst
2013).

An  altered function of the hypothalamic-pituitary-adrenal (HPA) axis and the sympathetic nervous system is also implicated in IBS (Chang et al 2008). Furthermore Fibromyalgia is related to a neuroendocrine disorder characterised by hyperactive pituitary ACTH release and a relative adrenal hyporesponsiveness (Griep et al 1993), while an exaggerated inflammatory process is considered an important pathophysiological feature of complex regional pain syndrome.(Park &  Ahn 2012)

BDS seems unaware of the systemic immune and metabolic imbalances, that voluminous evidence in ME or 'CFS' research has uncovered.
  They seem
comfortable to conclude that '... the various functional somatic syndromes
may thus simply be an artifact of medical specialisation reflecting the
referral process and specialists' tendency to focus only on symptoms
pertinent to their specialty.'  (2007)

The bias inherent in psychiatric diagnosis seems to have escaped their
attention. Psychiatry, with no objective markers and totally reliant on the
subjective opinion of its practitioners is so much more vulnerable to
misdiagnosis through bias than any other specialty.

People with ME, or so-called CFS who supposedly have 'all tests normal' do
indeed experience many symptoms related to the BDS identifiers.  However,
there is also evidence of physical problems in particular organs, as well
as systemic problems offering possible explanations for the symptoms
experienced:

Neurocognitive problems which are one of the most frequent and disabling
symptoms associated with ME.
Up to 90% of patients, in studies, report
having memory/attention deficit problems, made worse by physical or mental
exertion. (Cockshell and Mathias 2010) Evidence of neurological issues have
been found by Barnden et al found evidence of brainstem dysfunction and
altered homeostasis (
2011) Schutzer et al found Cerebrospinal Fluid
Proteomes which differentiated 'CFS' patients from those with Lyme disease
and controls.

Neuroinflammation has been found to be higher in ME  patients than in
healthy people; inflammation in certain areas of the brain - the cingulate
cortex, hippocampus,amygdala, thalamus, midbrain, and pons has been found
to be  elevated  in a way that correlates  with symptoms.
(Nakatomi Y et al
2014)

Cardiovascular dysfunction. with associated autonomic nervous system
dysfunction has long been proposed as part of the ME disease process. This
could be a result of relative inactivity, however it could also be
associated with a primary myocardial deficit.
(Breakthrough Autumn 2012) A
study by Peckerman et al showed that patients with severe CFS had
significantly lower stroke volume and cardiac output than the controls and
less ill patients. (2003).  Cardiovascular dysfunction in ME patients has
been well documented for many years, even so there has been little formal
research on heart abnormalities in ME.

Professor Julia Newton and colleagues found that the hearts of ME patients
have to work harder during prolonged standing, than in healthy people. They
also found that the left ventricular mass was substantially reduced by 23%
compared to controls. In addition "blood pool" volume was lower by 26% and
cardiac output lower by 25% compared to controls.

Cardiac output in normal people will vary from 7 litres per min to 5 litres
per min between standing and supine. In healthy people this drop is not
enough to affect function. But in ME sufferers Peckerman found that the
drop may be from 5 litres lying down to 3.5 litres standing up.

At this level, people with ME may be in borderline heart and organ failure.

A person with ME will often have cold hands, cold feet and low blood
pressure, even if they  are overweight- this is highly abnormal - and their
heart rates are often  increased  (10-12 beats a minute faster than in
healthy people ). Low blood pressure and high heart rates when standing
signify a condition called 'POTS' postural hypotension (tachycardia)
syndrome.

One of the key difficulties facing people with ME is standing still;  it
can bring on dizziness, altered vision, nausea and fatigue, indicating
possible autonomic nervous system dysfunction - POTS is an aspect of
autonomic dysfunction that can produce substantial disability.
(Breakthrough Autumn 2013).

It has been suggested that postural orthostatic tachycardia syndrome
(POTS),  relatively common in  patients,  be considered in the differential
diagnosis of ME; currently, measurement of haemodynamic response to
standing is not recommended in the UK NICE CFS/ME guidelines,
unfortunately.

Hoad et al  (2008), for example, found  significant POTS could be measured
in a high proportion (27%) of ME patients, but in only 9% of  controls.
Moreover, the POTS observed in the ME group was associated mainly with an
increased heart rate to more than 120 beats per minute on standing, while
increasing fatigue was significantly associated with the increase in heart
rate.

'Vaso-active' (blood vessel effecting) substances such as hydrogen sulfide,
nitric oxide and carbon dioxide, according to Dr. DeMeirleir, could be
causing a permanent increase in the size of the larger blood vessels in
ME/CFS patients.  As those blood vessels become flaccid the blood pressure
drops forcing the small blood vessels to tighten up in an attempt to
squeeze blood to the organs and muscles.(Johnson 2013)

Dr Paul Cheney points out that there are two kinds of heart failure. There
is the kind that "any cardiologist can diagnose in about a minute", this
kind, people with ME do not have, rather they have "Compensated Idiopathic
Cardiomyopathy" (ICM), which is different. ( Sieverling 2005)

Dr Cheney explains that in the medical literature, at least 35% of those
with a diagnosis of ICM will die within 5 years unless they receive a
transplant, yet he has been following ME patients for 20 years and has
never seen or heard of one person going on to transplant. It seems that it
is their ME which prevents the person developing complete heart failure.

Cheney concludes that the disease (ME ) itself " is protecting you from a
deeper problem that has been totally missed, including by me. I missed it,
too. Because it's so well-hidden."(Sieverling 2005)

Studies have shown that the  baroreflex response that regulates blood
pressure is under performing in ME. (Peckerman et al 2003) The heart's job
is to maintain blood pressure. If the blood pressure falls, organs start to
fail and are shut down in terms of priority. As these organ systems shut
down, this creates further problems for the body in terms of toxic overload
and susceptibility to viruses thus exacerbating all the problems of the ME
sufferer. (Myhill 2003)

A study showing that the mean age of ME patients dying from heart failure
is significantly lower than the age of those dying from heart failure in
the general US population, implies that ME is a risk factor to
cardio-vascular disorder.(Maes and Twisk 2009)

The autonomic nervous system is the part of the nervous system which
controls involuntary functions. It is composed of two sections, the
parasympathetic nervous system and the sympathetic nervous system. In many
chronic illnesses, this autonomic balance is impaired with an excessive
sympathetic nervous system response and under-active parasympathetic
nervous system response.

Research on those with ME suggests the parasympathetic nervous system
relaxation response is under-active and the sympathetic nervous system's
fight or flight' activity is either depressed, associated with exhaustion
of the stress response system, or over-reactive. As the autonomic nervous
system is one of the major regulatory systems in the body, this is a huge
problem.(Graham 2009).

Autonomic Nervous System Dysfunction could account for many of the perplexing and widespread symptoms in ME. This is because the Autonomic
Nervous System affects every system of the body: pain sensation, immune
system, heart rate, blood flow, blood volume, digestion, saliva,
temperature regulation, ability to exercise. Problems like immune
dysfunction, oxidative stress, toxic accumulation, cellular dysfunction can
all be linked to a dysfunctioning Autonomic Nervous System NS. (Neuffer
2013).

When the Autonomic Nervous System goes wrong, the consequences can be
severe; for instance, one of the main consequences is orthostatic
intolerance; i.e., the inability to remain standing for long without
suffering ill effects.(Breakthrough Summer 2007)

Well known "gut" issues characterised by pain, diarrhoea, bloating and
sensitivities to certain foods are a major feature of ME,  A Norwegian
study, for example, examined 84 patients, all with a main diagnosis of
"gastrointestinal symptoms self-attributed to food sensitivity". Of these
patients all but one were diagnosed with Irritable Bowel Syndrome (IBS) -
the majority  (71%) also had musculoskeletal pain and the chronic fatigue
found in ME. The authors of the study speculate whether an underlying
intestinal dysfunction may be at the root of ME and IBS. (Breakthrough
Autumn 2012)

The frequent association between ME and Irritable Bowel Syndrome could well
be governed by elevated circulating pro-inflammatory cytokines acting
either locally or on the brain-gut axis.

Studies confirm that the state of our gut can impact many areas of our
health, for example in diabetes the ratio of two bacterial families causes
an imbalance and disturbs metabolism. (Lassesen 2013)

Lower bacterial diversity is also associated with Crohn's disease. In
HIV-infected individuals the gut wall is leaky exposing bacteria to the
blood, causing inflammation. Irritable bowel syndrome can develop following
recovery from intestinal infections.

Many people with ME experience pain, diarrhoea, bloating and sensitivities
to certain foods. These symptoms can be triggered or made worse by physical
and mental exertion. These are important clues to what may may cause and
sustain ME. (CIFDS 2013)

Dr. Chia suggests that enteroviral infections, which can result in the
manifestation of ME, are a major problem in his patients; 55% of whom were
found to have a chronic enterovirus infection.
(Chia 2011)
Enteroviruses are responsible for a  wide variety of human diseases ranging
from mild gastroenteritis to full  multi-organ failure. They are commonly
considered to be the cause of Myalgic Encephalomyelitis and include
Polioviruses, Coxsackieviruses A&B, Echoviruses and E71.While
Poliomyelitis has virtually been eradicated in the Western world, others of
the genera have filled the vacuum so created. Enteroviruses,  remarkably
resistant to its harsh conditions, persist in the gut. Throughout the
second half of the 20th century there were several Enteroviral pandemics
with consequential ME.

Studies examining the microecology of the gastrointestinal (GI) tract have
identified specific microorganisms whose presence appears related to ME,
which is associated with marked alterations in the gut microbiota, with
lower levels of Bifidobacteria, one of the major genera of bacteria that
make up the colon flora and higher levels of aerobic bacteria. A CFIDS
Association of America pilot study, for example,  found greatly increased
ratios of Firmicute / Bacteriodetes bacteria before and after exercise in
ME. (CIFDS 2013) .

Reports also suggest that ME patients may have a major drop in all E.Coli
species - in contrast to  Crohn's Disease where  over 95% of the invasive
species are E.Coli.(Lassesen 2013) In IBS. frequently co-morbid with ME,
there is also considerable physical evidence of sensitizing
pro-inflammatory and lipotoxic lipids, their products and their receptors
are increased in tissues of IBS patients with colorectal hypersensitivity.
(Feng B et al 2012)

Post-exertional malaise or Post-Exertional Neuroimmune Exhaustion (PENE) is
implicitly dismissed by the SCAN question which refers to 'Unwarranted
fatiguability after even minor physical exertion'  It implies that there is
no reason for a person to be fatigued after minor exertion and implies that
all medical causes have been excluded. This is not the case.

PENE is central to ME and is characterised by a pathologically low
threshold of physical and mental fatiguability, exhaustion, pain and an
abnormal exacerbation of symptoms, involving a profound dysfunction of the
regulatory control network. (Carruthers et al 2012). This condition has not
been tested for in the BDS testing. Van Ness et al (2003) observed that
their study 'supports the stratification of patients based on quantifiable
measures of physiological response to exercise.' For example, they found
that '... the peak heart rate obtained during exercise showed progressively
decreasing values for the more impaired groups.' and 'Peak VO2 values were
less than predicted for all (levels of impairment) groups.'

The test for BDS also miss the point in ME of a worsening of physical
performance on a subsequent day of exercise. Van Ness et al also concluded
that given the fact  'that the CFS patients could not reproduce their
performance on the first test is indicative of the post-exertional malaise
that may be unique to this illness. The control group actually improved
slightly from test 1 to test 2.' (2007). Such evidence should give pause to diagnosing BDS without these tests.  Yet, these tests have been ignored by the psychiatric profession. However, the most severely affected, who BDS
appear to be targeting would be too ill to undergo these tests at all,
leaving them even more vulnerable to misinterpretation and misdiagnosis.

The danger to people,then, who experience PENE is that they will be
misdiagnosed as BDS or other somatoform disorder, because this cardinal
symptom is being ignored.

In the tradition of 19th century Insane Asylum medicine (Wallis 2012),  BDS
is again claiming paralysis as its own, under this new name, leaving people
with Severe ME, particularly, vulnerable and open to psychiatric
misinterpretation and potential harm: "Patients ... experience completely
different problems in daily life according to the nature of their most
bothersome symptom whether it be e.g. paralysis, .."(Aarhus University
Hospital 2011) .

Meantime most mainstream definitions for ME ignore paralysis. Paralysis,
sadly neglected and down- played by medicine in ME, needs medical
investigation and research, not psychiatric interpretation.  Our
consultation with ME patients shows that they commonly experience temporary
partial or total paralysis. This symptom could be one of the major features
of Severe ME. (Crowhurst 2013)

There are many possible reasons other than nerve damage for the paralysis in Very Severe ME; it may be linked in some way to Polio, given that ME was initially called Atypical Polio and has been linked to enteroviruses or it could be linked to the dysfunction of the autonomic nervous system, mitochondrial dysfunction, environmental poisoning or channelopathy. There may be others.

Paralysis is also associated with Lyme Disease, another disease with
similar symptoms to ME, which is not been adequately tested and appears to
be frequently incorrectly diagnosed as ME.

Of particular interest is the possible association with potassium imbalance
which causes muscle paralysis, known as Periodic Paralysis and is often
triggered by the following stimuli: noise, exercise, rest, sleep, food,
cold. (Crowhurst 2013)

The BDS diagnosis protocol presumes that the interviewer is fully up to
date on current medical research, is not ignoring that knowledge, or
falling victim to bias. The concern is that the questioner intending to
diagnose BDS may be either unwilling to accept the existence of ME as a
clinical condition-  or may already have decided that ME is purely a
somatoform disorder.

This is also a concern for the other physical diseases mentioned in the
identification of BDS.


The Risks of a BDS Diagnosis

The WHO Schedules for Clinical Assessment in Neuropsychiatry - Glossary
version 2.1 is crystal clear that if " the examiner considers that there
is, or probably is, a physical explanation for all the clinically
significant symptoms described.... skip out of the Section altogether. The
cut-off point is always passed if there is any doubt."  The burden of proof
is always upon the examiner to show that there is no physical explanation
for all the clinically significant symptoms. If they cannot prove ,it then
BDS is no better than "specious speculation". Given this expectation, it is
hard to see any justification for the inclusion of these physical illnesses
under BDS in the first place.

As Natalie Boulton points outs :

It is imperative that these complex clinical cases should be accurately
diagnosed, monitored and medically treated where possible; not just
dismissed and ignored as so often happens when the patient is presumed to
be paying too much attention to and exaggerating their symptoms. Medical
negligence is resulting in severe treatable illness being misdiagnosed as
'just ME' and ignored.(Boulton 2013)

Psychiatric disorders, like BDS, are not scientifically demonstrated
medical diseases, despite their efforts to make it so. There are no lab
tests, brain scans, X-rays or chemical imbalance tests that can verify any
mental disorder is a physical condition. (The Citizens Commission on Human
Rights (CCHR) ). This in itself should bring into question the validity of
BDS,  however, BDS is trying to assert that physical disorder is a mental
health condition itself, something quite different altogether.

Medicine, unfortunately, has a long history of giving a false psychogenic attribution to diseases, such as hysteria or conversion disorder, to diseases before their actual physical causes are known. (Pall 2007) Those
explanations are almost always, fatally flawed, both scientifically and
logically. Their widespread, uncritical acceptance and use has had serious
and specific adverse effects on the people upon whom they are used.
(Kennedy A 2012)

The Fallacy

In their emphasis on bodily distress, as opposed to possible physical
abnormalities, Fink et al state, 'Ignorance of or insufficient knowledge
about such bodily distress reactions may cause the symptoms to be
misinterpreted as physical disease located in peripheral organs and medical
attention to be misdirected with the ensuing risk of exposing the patients
to iatrogenic harm and further distress.' (2007)  But what about the
potential iatrogenic harm from misdiagnosis or misinterpretation as BDS?

Many patients are at risk of becoming victims of this fallacious diagnosis.

As Natalie Boulton (2013) points out in regard to ME :

"No one knows how many patients from all walks of life, including doctors,
nurses, teachers and social workers themselves, have been physically
disabled and even traumatised by the treatments they have received, been
made utterly dependent on others for their care, and denied any recognition
of, or apology for, the harm caused to them - including the loss of decades
of their lives."

How many more people will fall victim, if BDS is formally validated across
the NHS?

Allen Frances, Chair of DSM-lV and critic of DSM-5 says in relation to new
criteria: 'Do no harm - revise the system with a light and cautious touch
only when you are sure of what you are doing after a thorough risk/ benefit
analysis."  (AAPP 2011) This risk- assessment approach should apply
strongly to  the diagnosis and treatment of poorly identified conditions.
He adds, 'No decision can be right on narrow scientific grounds if it
winds up hurting people.'

A BDS diagnosis cannot even be claimed to be based on science and the
potential for harm is great.

There is no justification for trying to subsume physical diseases, without
a shred of proof, under psychiatry apart from a desperate attempt to claim
them. Who will benefit ? Not the ill person, who will almost certainly be
harmed. If someone has Cancer, for example, what would be the dreadful
consequences if Cancer was suddenly decided to be called a somatisation
disorder and treated psychiatrically, just because someone thought it was
good idea for research purposes to add it to the list, ignoring any
physical tests proving that it is an organic disease?

There appears to be no logical, methodological case for BDS apart from
personal opinion and the decision, for whatever reason, to discount
everything else.

It should be noted that any registered medical practitioner - consultant or
GP who chooses to dismiss or ignore widely available biomedical evidence,
is in clear breach of the legal requirement for doctors to keep up to date
with developments in medicine and medical science and this consequently
raises issues of medical indemnity. In other words any doctor who dismisses
ME as a psychiatric condition, is potentially in breach of GMC regulations.
(Hooper 2010)

Given this, it is surprising to find BDS being introduced into the  NHS for
the incorrect treatment of ME as a behavioural disorder.

Incredibly BDS claims it can cure diseases or injuries like Fibromyalgia,
IBS, Whiplash, Pain Syndrome, CFS. On what  possible basis can this claim
be made ? Where is the proof that patients are getting "completely well" ?

The Centre where BDS was conceived has apparently had "contact with 74
patients with chronic fatigue syndrome since they started in 1999. None of
these patients have been cured or returned to full-time work. " (Hansen
2013) The incarceration of Karina Hansen, who has Severe ME, raises serious
concerns. It has been  estimated to cost Danish tax payers approximately
£1500 pounds a day- almost half a million pounds has been spent so far with
no hint of success - yet BDS is being introduced into the UK as a cost
effective solution !

As Dr John Whiting states : the fact that Karina  "is still in hospital and
is no better and by the sound of things, is much worse than when she was
admitted to hospital, in itself, is evidence that her care givers have no
idea about the illness that they are trying to treat. How many illnesses do
we know of, that require such lengthy in hospital care?"(Whiting 2014)

Karina's parents describe her "treatment" : "She is daily exposed to
physical retraining and sense-therapy. She is not asked if she can manage
this or that, but is ordered to do it. No matter how she tries to protect
herself against these abusive actions and mistreatment - like crying,
turning around, scratch the ergotherapist . She is up against a bigger
force that has control over her and has deemed her to be a psychiatric
case."(Justice for Karina Hansen 2014)

This clinic has created so much patient dissatisfaction that 16 patient
associations, reportedly, have requested that the clinic be investigated.
(Help ME Circle 2014)  Such is the outcry that the Danish Parliament
debated the situation on 19th March 214.

Incredibly BDS claims it can cure diseases or injuries like Fibromyalgia,
IBS, Whiplash, Pain Syndrome, CFS. On what  possible basis can this claim
be made ? Where is the proof that patients are getting "completely well" ?

The propagators of BDS would do well to take note of fellow psychiatrist
Allen Frances, chair of DSM- lV and  critic of DSM-5. Frances says: ' A
diagnosis is a call to action with huge and unpredictable results'. (AAPP
2011) This should serve as a caution in proceeding to treat a condition as
psychiatric when it is in fact physical. Many patients have paid the price
for this.

This is indeed the case with treatment of ME ;  Karina Hansen is the
subject in an open-ended experiment she has refused to consent to, or as Dr
John Whiting puts it is she "is is literally becoming the sacrificial lamb
in the name of psychosomatic illness. "(Whiting 2014)

Unless you understand the horror of Very Severe ME, you could not possibly
comprehend the harm that is potentially being done to Karina .

Jennie Spotila (2014) statement : "I reject the psychogenic hypothesis
because the data is not there"-is  a perfect summary of this paper's
argument, which has tried to show how ME and the other illnesses are not
"medically unexplained" but medically neglected.

Conclusion

BDS is a dangerous attempt by psychiatry to redefine physical illness as
mental disorder.

It may try to wrap itself in eloquent sounding language, but BDS cannot say
very much at all to justify itself, once you untangle it. The potential
harm likely to be inflicted upon a vast range of vulnerable patients,
especially the most severely affected, though, is very real. Anyone
representing ME interests in the UK should take note, then action to stop
this audacious attempt by psychiatry to completely impose a  psychiatric
label on people with ME. BDS is a game changer. It must not be allowed to
spread.

It should serve as a resounding wake-up call to the ME Community to
clearly separate ME from CFSand not compromise in demanding   a full
biomedical service for this devastating neurological disease.

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--
Greg Crowhurst
www.stonebird.co.uk
(The Lived Experience of Severe ME)

Greg's new book* Severe ME Featuring Justice for Karina Hansen* is now
available :  http://www.stonebird.co.uk/severemebook/severeme.html

Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last

 
 

New research provides evidence of neuroinflammation in chronic fatigue syndrome (ME/CFS,) thus providing support for the alternative name myalgic encephalomyelitis.

In this small study, PET scans of the brains revealed inflammation in multiple areas of the brain... cognitive impairment was linked to inflammation in the amygdala, thalamus, and midbrain. Pain was linked to cingulate cortex inflammation, and depression to hippocampus inflammation.